We are pleased to offer
the third of four installments
of the Family Caregiver
Guide (FCG), which is made
possible by a generous grant
from Forest Laboratories, Inc.
with additional support from
The Rowland & Sylvia
Schaefer Family Foundation,
Inc. The goals of the FCG are
to provide caregivers unable
to attend the Family Caregiver
Workshop with an improved
understanding of the disease;
effective communication
strategies that improve interactions
between the caregiver
and the person with dementia;
a deeper awareness of and
ability to cope with challenging
behaviors demonstrated
by persons with dementia; and
knowledge about the importance
of self care.

Many people who attend the Family
Caregiver Workshops ask “How do I
deal with what’s to come in the
future?” It would be wonderful if
there was a list of effective strategies
for every possible scenario but it’s
not that simple. Dementia is a complex
disease that affects each person
with dementia (PWD) differently. It
often catches caregivers off guard
because they are ill-prepared to cope
with the wide range of behaviors.
The first thing family members need
to understand is if you have met one
person with dementia, you have met
one person. In other words, each person
with dementia is unique.
Behaviors vary and come and go.
Although in every Workshop family
members may see some commonalities
exhibited by their PWD, care can
never be standardized.

Utilizing a person-centered care
approach is imperative in order to
accurately interpret and respond to
behaviors demonstrated by the PWD.
Knowing the PWD’s personality, key
relationships, history, routines, personal
preferences and hobbies provides
a window into understanding
their behavior. Other factors which
will provide clues include:

What stage of the illness is the
PWD in?

Are they suffering from other medical
conditions such as hearing,
vision, mobility loss or other
chronic illnesses?

What physical approach is taken
with the PWD?

What is the general mood of the
PWD?

Are people talking down to or
quizzing the PWD?

Is the PWD occupied in any other
ways?

Is the environment stable and
structured?

Are people asking the PWD to do
tasks that may be too complex?

Let’s examine a story I was recently
told by a family caregiver who
was extremely stressed by her husband’s
behavior.

“Every morning my husband wakes
up before five AM and repeatedly
asks me, “Where is the laundry? I
need to wash and iron the laundry.”
He continues to ask about the laundry
and it’s driving me crazy. No
matter how many times I tell him the
laundry is done and he can relax, he
is always angry. He yells, criticizes
me, and two hours later will apologize
for his rage. We go through this
scenario daily. It’s exhausting! What
should I do?”

What does her husband’s repetitive
behavior mean? I asked her to analyze
the situation and consider the
following questions: What did your
husband do for a living? What was
his daily routine? Did he have any
hobbies? What is his current emotional
status? Can you describe his
personality?

After she was able to emotionally
remove herself from the situation,
she was better able to understand
its meaning. Her husband owned a
dry cleaning business for 40 years,
worked six days a week, and his life
revolved around his work. He supervised
ten employees and was used to being in control. He sold his business
shortly after being diagnosed with
dementia. His wife learned that using
facts and reasoning did not diminish
his anger. She needed to adopt a new
approach. One morning she asked
her husband to help her with the
laundry and “inspect” it as it was
folded to make sure it was done correctly.
They were able to reminisce
about his days at the dry cleaning
store and shortly thereafter she
noticed his anger diminished. He
needed a sense of identity—a purpose.
He missed feeling useful and
now she helped to fulfill his emotional
needs.

Tom Kitwood, a psychologist and
author of Dementia Reconsidered:
The Person Comes First (1997) reinforces
this idea. He states that the
main psychological needs of people
with dementia are:

Love

Occupation

Sense of identity

Inclusion

Comfort

Attachment

If you think about it, these are the
psychological needs of all people. If
they are met, people generally feel a
sense of security and well-being. The
PWD experiences so many losses in
addition to the inability to perform
routine tasks and make complex
decisions. Eventually they suffer
from a profound loss of self.
Wouldn’t just one of these losses
change your behavior? It is up to
family and professional caregivers to
understand what is driving the PWD
and what their reactions and responses
mean. This is by no means easy
and requires a certain way of
thinking. It also requires flexibility
and creative problem-solving: If Plan
A doesn’t work, Plan B or even C
might be required. This may seem
like a full-time job (and it is) but the
payoff is rewarding. Caregivers will
experience reduced stress and will be
able to establish and sustain a newly
defined relationship with the PWD.

Before addressing specific behaviors
that can be described as problematic,
we must first consider our definition
of a problem. Is it OK if a
PWD likes to wear the same shirt and
pants everyday? What if a PWD eats
with his or her hands? Is it problematic
if a PWD repeats the same question
30 times a day? Is it wrong if a
PWD stays up all night and sleeps all
day? Should a PWD bathe everyday
if they are not incontinent? Is it a
problem if a PWD is constantly trying
to leave the house and wander?

Answers to these questions may
vary and caregivers must consider if
the PWD’s behavior is more a problem
for the caregiver or one that
might potentially place the PWD at
risk. The caregiver should change
their expectations of the PWD and
consider what really matters. Think
of it as conducting a cost-benefit
analysis: Is it worth placing more
strain on an already fragile relationship
to argue about clothing? Perhaps
you can purchase several of the same
types of shirts or pants the PWD likes
to wear. Thinking along the same
lines, maybe you can purchase or
prepare food that is easy for the PWD
to handle with their hands as they
may no longer be able to utilize silverware
properly. Consider it might
be OK if the PWD only wants to
bathe twice a week. PWD’s new
behaviors, routines, and preferences
often surprise the caregiver but it is
important to realize the caregiver will
need to adapt to this new way of life.
People with dementia cannot change.

Let’s explore some specific areas
that often bring about behavioral
challenges, examine the meaning of
these behaviors, and provide some
effective coping strategies.

It is a good idea for the caregiver
or home care worker to start by
keeping a journal noting what happened:
where the behavior occurred,
when the behavior occurred, what
was said prior to the behavior occurring,
and who was present at the
time. Keeping a log that addresses
these points, in addition to keeping
in mind the personal history of the
PWD, will often enable the caregiver
to better understand the PWD’s
behaviors and effectively develop
coping strategies.

BathingBehavioral Challenges
and Considerations

Is the bathroom too cold? Is the
water the right temperature?

Could the PWD be uncomfortable
being undressed in front of a home
health aide, child, or even a spouse
or partner?

Is it too difficult for the PWD to
get undressed, bathe, or wash their
hair themselves?

Is the PWD afraid of falling while
getting into the tub?

Is the lighting in the bathroom
too bright or too dim?

Is the PWD fatigued at this time?

Might the water be frightening to
them?

Is the shower nozzle spraying
water in the PWD’s face

Coping Strategies

Make the bathroom safe. Install grab
bars near the toilet and inside the
shower. If you have a tub/shower, use
a bathtub transfer bench or shower
chair inside the bathtub facing away
from the showerhead. Get a handheld
showerhead to avoid water spraying
in the PWD’s face and place temperature
controls on hot water knobs to
prevent scalding. Remove locks on
bathroom doors, utilize non-skid bath
mats, and cover radiators. For additional
safety tips, visit
www.thiscaringhome.org, which has
a wealth of safety tips for all areas of
the home.

Make bath time an enjoyable
experience. Schedule it when the
PWD is relaxed and not fatigued,
give the PWD a plush bathrobe, and
try aromatherapy (only if the PWD
likes it) using scents the PWD
enjoys. Buy a shower radio and play
music the PWD appreciates.

Determine if the PWD is uncomfortable
being fully exposed. If this
is the case, buy a cape or cut a hole
in a shower curtain and place it over
the PWD. Wash them under the cape
from the bottom up. Distract the
PWD with an enjoyable conversation
that does not focus on bathing. If the PWD seems afraid, validate their
emotions and provide reassurance.

Utilize rinse-free products available
from the Alzheimer’s Store,
which has a wide range of products
and activities for people in all phases
of dementia. Visit www.alzstore.com
or call 800-752-3238. Display only
the bath products you need as the
PWD may mistake a tube of toothpaste
as ointment, which could be
upsetting to the PWD.

SleepingBehavioral Challenges
and Considerations

Does the PWD have a routine?
Drink caffeinated beverages? Drink
fluids prior to bedtime and need to
use the bathroom throughout the
night? Have day-night reversal?

Is the PWD over-medicated or
experiencing pain?

Is the PWD bored or depressed?
Are they involved in any activities
during the day? Might sleep issues
be related to other medical conditions?

Coping Strategies

Establish a daytime routine. Try having
the PWD wake up at the same
time (according to their preference)
and eat at the same time each day.

Eliminate caffeinated beverages
and limit fluids around bedtime.

Check with the PWD’s primary
physician or neurologist about medications
and medication interactions.
Could the PWD take a different
dosage of medication or take it at a
different time?

If a PWD is up for days and
unable to sleep, consult with their
physician. You need your sleep and
so does the PWD. You might also
consider an overnight social program,
such as the Hebrew Home for
the Aged in Riverdale, for PWD who
have different body clocks.

Also consider traditional social
day programs which provide the
PWD with social interaction and
activities. Caregivers should do their
homework and visit programs to
determine if they will be a good fit
for the PWD. For additional information
contact our 24-hour Helpline at
800-272-3900.

EatingBehavioral Challenges
and Considerations

Does the PWD have cataracts,
which could impact their ability to
clearly see what they are eating?

Does the PWD have a toothache?
Are dentures ill-fitting?

Are prescription drugs making the
PWD nauseous?

Has the PWD’s sense of taste been
impacted by dementia?

Is the task of eating too complex?
Is the PWD experiencing difficulty
utilizing utensils?

Is the TV on during mealtime?

Do meals look unappetizing? Does
the PWD like the food being offered?

Is the dining area cluttered or does it
contain busy patterns?

Are you eating in restaurants during
peak dining hours?

Coping Strategies

Address any other medical conditions
with individual specialists.

Try having dentures readjusted or
refitted. Accompany the PWD to
the dentist. Ask the dentist to keep
all communication with the PWD
short and simple.

Eat out at off-hours when restaurants
may be less congested.

Be aware of your home environment.
Place chairs across from
each other to encourage eye contact,
turn off the TV, and engage in
conversation.

Keep the dining table uncluttered
and simple.

Prepare foods that are easy for the
PWD to eat on their own such as
chicken fingers. Maximize the
existing strengths of the PWD.

Ask the PWD to help you prepare
the meal. “Let’s prepare dinner
together. I would love your help.”

IncontinenceBehavioral Challenges
and Considerations

Is the bathroom easily recognizable, accessible and easy to use?

Are medications or other medical
conditions such as a urinary
tract infection (UTI) resulting in
incontinence?

Is the PWD in denial regarding
his or her incontinence and
unable to accept that they need
undergarments?

Coping Strategies

Paint the door of the bathroom a
contrasting color from the wall
color. Place a sign on the bathroom
door and include a picture of a toilet.
Use a toilet seat that is an
opposing color to help differentiate
the seat from the toilet.

If the PWD’s health takes a dramatic
downward turn, contact their
physician to determine if the PWD
has a UTI or other medical issue.

If the PWD becomes suddenly
incontinent, contact their physician
to discuss medications and possible
medication interactions.

Place a commode in the bedroom
in a place which is easily accessible
and not a safety hazard.

Respectfully suggest the PWD use
the bathroom prior to a long car
ride or outing, or at regular intervals
at home.

Delusions and
Hallucinations
Delusions are false beliefs and hallucinations
are distortions in a person’s
perception of reality. Hallucinations
may be sensory experiences in which
a person sees, hears, smells, tastes,
or feels something that is not there.

Behavioral Challenges
and Considerations

Understand that delusions and/or
hallucinations can frequently occur
in people with dementia.

Common delusions include delusions
about infidelity, stealing, and
facial recognition.

Common hallucinations include a
PWD seeing people who are not
there or falsely hearing the doorbell
ringing, or people talking.

Coping Strategies
Delusions often catch family caregivers
off-guard, especially when
they are the focus of the delusion
(“You took my money, you stole my
jewelry”). Reassure the PWD and
validate their emotions. Get into their
reality and acknowledge their losses.
I heard a story about a woman with
dementia who thought, incorrectly,
her husband was having an affair.
The daughter consoled her mother
and acted concerned, rather than
telling Mom it was nonsense. Her
mother felt heard and, in turn, never
brought the topic up again.

Hallucinations can be very scary
for the PWD as well as the caregiver.
First, check the environment. Is the
PWD watching TV and did the content
of a show transform into their
reality? Are there shadows in the
room or a glare that could be misinterpreted
by the PWD? Are there
paintings on the wall that might seem
scary to a PWD? Try to modify the
environment if any of these issues
are present.

Reassure the PWD and try to
determine if there is a reason for the
hallucination. Could they have heard
the doorbell ringing three hours ago
and think it is still ringing? If the
PWD is disturbed and anxious, contact
their physician.

Remove visual cues that might
stimulate wandering such as placing
a drapery over the door. If the PWD
doesn’t see the door, they may not
feel they want to go outside. Also
remove keys and coats from their
sightline.

Create a wandering path inside the
home. Change pictures, photos, and
plants on a weekly basis to constantly
stimulate the PWD. Take the person
for a walk.

Anger

A family caregiver recently shared
the following story with me. “My
husband, a holocaust survivor diagnosed
with Lewy body dementia,
woke up in the middle of the night to
go to the bathroom, tripped and fell.
He broke two ribs and after a short
hospital stay he was moved to a
rehabilitation facility. We have no
children and because of his personal
history, he has a strong sense of
attachment to me. The rehab facility
is having difficulty dealing with him.
When I arrived for a visit he was so
angry that he punched me. I told him
I would visit every day but it did not
seem to make a difference. A few
hours later he apologized for his outburst
and promised it would never
happen again. I have heard this
before. What should I do?”

I asked the caregiver the
following questions:

What do you think is creating
his anxiety? Is he receiving any
medication for anxiety?

Have you told the staff about his
personal history and successful
strategies you use to reduce his
anxiety/anger?

How does your husband react
when it is time for you to leave?

His hospitalization and recent move
to the rehab was likely very disorienting
to him. His wife knew her
husband was anxious being there and
missed her terribly. Whenever it was
time for her to leave he became
increasingly anxious. She would visit
with him in an area near the elevator
and realized her husband was not
engaged in an activity when it was
time for her to leave.

After some creative problem-solving,
his wife developed the following
strategies:

Share her husband’s personal history
as a holocaust survivor—and the
resulting need for attachment—
with the staff at the rehab. Make
sure all shifts on the rehab floor
receive this information.

Make sure not to leave during a
shift change at the facility, which
was a chaotic time at the rehab and
a confusing time for her husband.

Visit away from the elevator and
notify the staff five minutes prior to
leaving the facility so they could
engage her husband in an activity
or distract him in some other way.

Speak to the physician about possibly
prescribing a light dose of antianxiety
medication.

After several days some of her strategies
were working. Her husband’s
anxiety and anger had diminished.
He was still nervous when he sensed
she was leaving but with the help of
the staff his mood was improved and
her stress was reduced.

It is critical to remember that caregivers
must creatively respond to
behaviors–reality and facts will not
work. Changing your way of thinking
is something that doesn’t happen
overnight. It is a trial-and-error
process that takes time. If you can
remember to utilize (in the midst of a
very emotional time) some of the techniques
discussed in this guide, hopefully
your stress will be diminished.